My leptomeningeal journey
 

Hi,

Paul says the best thing I can do is to share what I'm going through so you can learn as it happens. I hope to keep this up to date so that you can also have access to the latest in drug developments.

-Ann


I think my footer tells it plainly but after a PCR to neoadjuvant TCHP I developed a cerebellar met in Spring 2015 that was undiagnosed until July 2015. I learned that doctors are not good with understanding symptoms of cerebellar metastasis at all.

After a surgical resection (tumor was very dense, poorly vascularized, well differentiated, unusual for a met) 7 weeks later I had 5 sessions of LINAC SRS to the tumor bed.

My team didn't want me on any drugs but I knew that if I was such a strong responder to Herceptin/targeted therapies that we should do more. The only way they would agree to place an Ommaya reservoir (port into my skull) was if I had leptomeningeal (LM) disease -- basically cancerous meningitis.

My neuro-onc seemed like she would listen to us, close to the end of her career and she is tired of seeing so many people die. In contrast to standard practice she does a baseline brain MRI just 6 weeks post SRS, which revealed a new area of uptake. It is either LM or else atypical inflammation they told me. Scan again in a month. I did my best over the next month to treat it like it was my brain healing, but I had a nagging feeling about this.

The likelihood of a surgical resection of getting all of the tumor cells is like a plane having a perfect landing. I've had it happen once and we all broke out into applause -- but with brain mets, the chances were really low. When you read how they handle brain mets you see a lot of professional handwringing -- oh but for the blood brain barrier. I could only see the corpses of the dead women who had come before me. "They are planning for me to die," I told my support group. They didn't want to believe it either.

So I have this scan in October that is inconclusive and they ask me about neuro pain and I pass all the exams with flying colors. I've been practicing ballet at home something that really tests your balance, making costumes for my kids, my motor skills are great. I look in the mirror and make all the weird faces and there is no drooping. But I'm having facial nerve twinges, it moves around my face and cheek, sometimes causing brief numbness, sometimes on the bridge of my nose, next to my eye. "We aren't looking for that" they told me. Okay but then who do I talk to about it because it isn't normal for me and it is what I am experiencing. They almost have me come in before Thanksgiving but the family is coming to town and you know how it is.

November 30, 2015 I have my follow-up brain MRI done and it is a long one. They do three types of tests this time -- with contrast, based on vascularization, and based on physiological by-products. What was unclear a month before is very clear now. My symptoms continued and then last week became more persistant which a constant feeling of swelling on the right and my neck started to feel stiff. I went to the ER and told them I might pass every neuro exam but I have been atypical every step of the way, we know there is cancer there and my body is saying enough.

I have had a neck and spine MRI which came back clear. I had a PET scan 12/7 that showed no disease outside of my skull -- basically nothing outside of the right cerebellum.

Friday 12/4 I had an ommaya reservoir placed into my head with a starting dose of 20 mg of IT Herceptin. I also received my first dose of IV Kadcyla (repeated ever 21 days).

This week I will receive three doses of IT Herceptin at 30 mg each, working up to a higher dosage. My neuro-onc is willing to dose me more times of the week as the hospital is close by to my house.

Today I am having a spinal flow test started where they inject a radioactive contrast into a lumbar puncture and then over the next few days they will image me to see if there are any blockages that might preclude introduction of a cytotoxic agent due to pooling. I plan to do qigong, energetic movement sequences, to try to improve flow on my own.

I have been offered whole brain radiation and have declined it so far. I know from speaking with my MO, RO and one other HER2 brain researcher that they aren't taking PCR into account at all and my team here is even less familiar with how well the targeted therapies can work.

I had my brain tumor tissue tested a month ago by Foundation One, facilitated by my naturopathic oncologist. I do not show any genes of resistance to targeted therapies. My blood labs from last week were perfect, I've been working with a naturopathic oncologist since my diagnosis to improve my copper, zinc, Vit D, ferritin and magnesium levels -- and done a lot of extra work on my own to get there. I am basically a healthy person with a mutant cell line.

If I can get back to NED then my plan is to try to use immunotherapy to get rid of this cancerous cell line once and for all. I am very far ahead of my medical team and it can be quite frustrating but I think that my misfortune can be turned around and we might start saving lives here.

I have shifted my diet to be ketogenic with very low carbs due to the benefits that this diet can have on tumors in the central nervous system. Basically high fat, high protein and low carb.

What else do you want to know?

Ann

Re: My leptomeningeal journey
 

Ann,

Thanks so much for this posting. I do believe that the information will help others recognize symptoms and raise awareness of the options that are out there for treatment. My sincere hope is that it helps YOU and you get to NED soon.

As another person who had a PCR, I have been told that my prognosis is good. I expect that you were told the same. In addition, I was told that being er-/pr- that if the cancer is going to come back, the risk is very high in the first two years from diagnosis and then drops pretty dramatically. Basically if the cancer doesn't recur in five years then chances are very low of it ever coming back.

What I'm wondering is what screening did you have initially to determine that you only had cancer in the breast and nodes? Additionally, what testing did you have after treatment to determine that you had a PCR?

Take care,
Brenda

Re: My leptomeningeal journey
 

-- part 2 --

When I was first diagnosed they were sure I was metastatic.

I had been breastfeeding through two pregnancies and thought since cancer didn't run in my family that I was cool. My ob/gyn told me to wait for mammograms until I stopped nursing -- I had my second son when I turned 40.

I found the lump in October but delayed getting screening because (1) my ob/gyns office forgot the year before, (2) it had to be something else, (3) we had back to back travel plans coming up out of town, (4) one of my kids had croup and I had to reschedule. I finally in January of 2014 was like I have to do something about this and got in to the breast clinic at my hospital which still took another two weeks wait.

The very first day they did a mammogram, then ultrasound and the radiologist said "this isn't anything else". They had an opening in a couple of hours for a core biopsy and so I took it. The imaging lit up on the lower-outer portion of my left breast (around 5cm breast tumor), my left axilla was so lit up that they didn't even count, and I had an internal mammary node behind my breastbone that looked as if it contained tumor as well.

Over the next two weeks I had an MRI, PET scan and bone scan. Since I had no symptoms of brain disease or penetration they never took the scans up that far into my head.

I tried to find the significance of the internal mammary node on the breastcancer.org site -- only crickets. My doctors also couldn't tell me the significance of that node.

In Chinese Medicine they divide the breast into four quadrants -- inner and outer, upper and lower. To have cancer on the outer side was a better diagnosis to have. To have cancer on the inner area was detrimental. That internal mammary node really got me wondering.

After 3 rounds of neoadjuvant TCHP, a drug combo they still don't have study results available for in the early stage population (July 2016, maybe?), I asked my MO -- what if it comes back. He was very reassuring that it wasn't going to come back, but if it did we would deal with it then. At no time did he ever point out the very real risk of brain mets.

After 4 rounds my MO said he couldn't feel tumor any longer. My Chinese Medicine doc said he felt the tumor was gone. My cranio-sacral therapist who does energetic work felt it was gone.

(Gotta pick up kids at school, more later)

Re: My leptomeningeal journey
 

-- Part 3 --

From the time I was diagnosed I was of the mind -- if I have to do this awful stuff to my body, how can I do the least amount of damage?

I tracked down a Chinese Medicine practitioner also experienced in Medical Qigong and working specifically with cancer patients (he's from Beijing) and also jumped on it when I learned that there was a sub-specialty for naturopathic oncology. Working with these two practitioners I began the exercise of trying to restore my body -- something my medical oncologist wouldn't test for, wasn't interested in, and frankly wasn't going to change how he took care of me -- my kidney and liver were functioning just fine.

From a Chinese Medicine standpoint I had continued to slide from where I started with my uterine fibroids diagnosis years earlier -- spleen qi deficiency, blood qi deficiency, blood stasis, liver qi stagnation to which was added kidney yin and yang deficiency. My only hope was that I hadn't depleted by "jin" or life force, too much. I held onto the adage "restore the blood, restores the qi, which renews the jin". I started with weekly acupunture treatments and several herbal combinations that have changed a little as I have gone through treatment and I know it is helping, even if behind the scenes. My doctor says, you don't even need to believe it works but it will help keep your immune system up. Using Chinese herbs I was able to avoid taking neupogen during treatment and my WBC levels stayed tolerable (take chemo which flattens the blood then take another drug to force the bones which requires a third drug to deal with the pain and side effects -- what?)

With my naturopathic oncologist I was able to get additional blood labs done at the start, before I did any treatment. My copper was sky-high, my zinc, magnesium, and ferritin at the floor. I had low vitamin D levels. I have learned from my research that in any patient population that doctors assume that you are in-range and proceed with treatment from there. The fact is that most breast cancer patients levels are off and they need to get their bodies into a healthier place -- but no one checks, no one tells them, no one in oncology knows how to do this.

My naturopathic-onc said it was part of his training to just figure out what was off of the things that are most often off. I even went to a TNBC metabolic discussion at a research institute here in Seattle last Spring. The researcher was talking about all these enzymatic reactions and I knew from my research that they are all dependent on zinc level being good. But, TNBC patients tend to have very skewed copper/zinc levels -- so how can you assume that these enzymatic reactions would be available at all? He couldn't answer my questions.

I wanted to also protect my ovaries, totally not a concern for me as I was HR- I didn't want to be forced into early menopause. The only reason chemo attacks them is that the proliferative cycle that the ovarian cycles go through in developing follicles is constant -- those rapidly dividing cells that cell-phase specific cytotoxins are so great at nailing. Why make me go into menopause and deal with all the resulting bone and memory issues if I didn't have to? I asked about ovarian suppression of my oncology and gynecologist and they couldn't support it. Very frustrating. In the end early trial results came back showing that ovarian suppression during chemo did actually help and I got my Zoladex shot that covered round 5 and 6 of chemo. Five months after finishing my TCHP my period came back.

Re: My leptomeningeal journey
 

-- part 4 --

Zoladex was hard and made my bones ache. I had a hard time climbing the stairs. I did water-based fasting for round 5 and most of 6 but it was rough going. My MO said that we could skip round 6 as I was in such pain but they we were going off into "grey territory". In hindsight I probably didn't need to do those last 1-2 cycles at all, I just didn't know any better.

The day after my 6th cycle they gave me another breast MRI (whole torso) -- why not earlier in the week when we could have used the data to decide not to treat -- and everything looked clear. Two nodes still lit up but until surgery we didn't know what they were. The energetic healer I see told me, I think it is going to just be scar tissue -- and you know she was right.

I was able to get a 7th dose of Perjeta before my surgery, so dual blockade with Herceptin/Perjeta for one cycle since the trials looked at 6 and 7 doses and I figured why not. It is harder to get Perjeta with Herceptin than Herceptin alone I can report -- been there, done that.

I delayed on my surgery; 4-6 weeks after finishing chemo they said, but I dragged my feet. If the drugs could work that well then why go about injuring myself to find out? It was agonizing. In the end it was about my kids and doing all that I could for them. Besides, I was able to get my breast surgeon to agree to do less. I had a lumpectomy and then based on a research study looking at whether SND was indicative of a PCR in the axilla (which it was about 95% of the time) she was willing (with another senior doc and researcher's blessing) to take less with the understanding that if we needed to do more we would. See in my case they told me that rads would take care of the internal mammary node that was affected and that they weren't going to do thoracic surgery to remove what was still there. If rads were good enough for one area then why not the rest? I read the footers on breastcancer.org -- a really high rate of ALND and a really low level of positives. Why hack yourself to bits and cause lymphedema if you didn't have to? My SND removed 3 nodes and they only found scar tissue. My only consolation was that surgery had basically ruled out residual cancer.

Re: My leptomeningeal journey
 

Ann
Thank you for this.
You are so right - they don't know, they don't tell you and they don't check!

Re: My leptomeningeal journey
 

-- part 5 --

Radiation treatment really bothered me in light of all that I had been through. My MO said that the TCHP was going to dissolve the cancer -- and it had. So why was I going to cause my body permanent damage by burning it with radiation? I was suffering from some serious cognitive dissonance.

Remember that the addition of Perjeta to the locally advanced HER2 population happened in September/October 2013 and was really unprecedented. They took a drug that was working well with the stage 4 patients and approved its use neoadjuvantly for stage 3 patients without further study; the studies would come. This is why during chemo I could find no studies about TCHP, they didn't exist then and they don't now. They just took an existing protocol, TCH (Taxotere, Carboplatin, Herceptin) that was producing strong results and just tacked Perjeta onto the lot. The earliest that I've read that any published data will be available is Summer 2016. You are all still a mystery to the scientific community right now.

Except that there are people like me, who started a thread on breastcancer.org to get folks to post their responses to neoadjuvant treatment over the past year. What my early results show is that you have about a 50% chance with ER2+/HR- breast cancer of having a PCR, and slightly less chance if you are triple positive -- but still also almost half. For all respondents except for one there was major disease diminishment which is still an incredible win for all of us as sometimes they can remove the bulk of disease and that is the end of the story. I still think they need to understand why some respond really well and some don't but I don't see any plans for that to happen anytime soon. The best we can do is pool our own results if we have advanced tumor tissue testing done.

So back to rads...

I really hemmed and hawed about this. It is a one-way street, you can't go back from radiation treatment and it causes some serious damage in the process. Since I had a left breast cancer and an affected node behind my breastbone I was really concerned about the risk of heart damage from rads, especially while being on Herceptin. I managed to get into a study using proton therapy through Seattle Cancer Care that wasn't funded but offered patients cut-rate to participate. In the end it was about $15K out of pocket to do it this way, something not everyone can afford, but sometimes this is the way that treatments advance. Insurance actually covered the peripheral costs well so it could have been a lot more of an expense than it was.

Proton therapy uses custom fields and plates, plus lots of imaging, as they do in radiation oncology, to formulate treatment fields. The difference is in the energy source, they can control the depth at which the protons enter and disperse their energy -- there are no pass-through rays. Unlike those in my cancer group I had no burns on my back. My lungs and heart were not touched, maybe a bit of my pleura was affected in the field, but it was extremely targeted to my body and my cancer.

I tried to get her to do less. I read lots of articles and the risk of breast cancer showing up in a different area of the same breast is really quite low. She said that I didn't understand how sick I was and put me down. My partner was like, but the kids, do it for the kids, so I reluctantly signed up and did my 37 doses. I also had a really bad reaction to rads with wet and dry desquamation, burns, weeping open areas, it was awful. I've heard that for some of us the Herceptin might make rads worse on the body, but I know others who did both and didn't have such a strong reaction -- I think they don't know how to tell who to do more for and who to do less for.

While getting my proton treatment I had the chance to meet a lot of primary brain cancer patients, newly diagnosed adults and kids even with glioblastomas, astrogliomas it was heart-breaking. I took time to research ways that you could push brain cancer treatment using diet, supplements, oxygen, and more. Little did I know that I would be using that same information months down the line.

Re: My leptomeningeal journey
 

--part 6 --

Surviving Active Rads Treatment

I found the room I was receiving treatment in to be freezing; it was the late Fall. I ended up wearing tights under my pants, bringing my own wool blanket with me, brought a long-sleeve wrap cardigan to wear under my gown, wore extra fuzzy socks just during treatment, and had them put warmed blankets over my arms -- and then I was comfortable.

----


I tried a bunch of different recommended lotions, ointments and creams during treatment. Here's what seemed to work best:
Aquaphor
Calendula lotion
Silvadene
Lubriderm



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For dry and wet desquamation the silicon dressings by Mepilex worked best. They cling without adhering and the foam versions can absorb exuded fluids.



For wet desquamation I found Silvadene cream covered with a hydrogel dressing and held in place with a larger piece of Mepilex over the damaged area was amazing. The hydrogel dressing is a wet dressing and it lets the wound heal without further trauma. You can keep the hydrogel pad in place for a couple days before changing it (I looked it up).



Johnson & Johnson used to sell hydrogel pads as part of their consumer bandaging line and I still had some in my first aid kit. Your treatment facility should be able to order some in for use with patients. My facility was reluctant for some BS administrative reason. You don't need much and you can order it online but it usually comes in packs of 10 larger sheets.


---


At the end of treatment I started feeling itchy all over and felt like I had too much histamine in my body. The body produces histamine as part of the inflammation used to heal injuries in the body. I had some modicum of relief when I took liquid Claritin (Children's, was on-hand and the liquid works rapidly) but I still felt icky like when I have had bad allergies - nauseous even. After reading up about histamine intolerance I realized that rads had overwhelmed my body's ability to break down histamine -- there was too much inflammation. Anti-histamines only block histamine receptors but histamines still circulate.



DAO is the enzyme your body produces to break down histamine, but I speculated that my body couldn't keep up. My naturopathic oncologist heard me out and gave me a DAO supplement (HistDAO) and within a couple of days I felt better. Use more things if you need to because you don't have to feel like crap.

Re: My leptomeningeal journey
 

This is such an informative thread. I am so appreciative of your time and willingness to share the hell you have been through. This information will be here for us, Heaven forbid we should need it. You are pioneering the way and making it easier for those who follow your path. I can't thank you enough and PRAY to God that I never have need to revisit this thread for my own uses.
God Bless you.

Re: My leptomeningeal journey
 

-- part 7 --

POST-RADIATION TREATMENT RECOVERY

The first six months are the most critical to tissue repair



massaging my breast
I started doing this during rads and continued to try to keep from having the tissue turn fibrotic due to stagnation. It evolved into a more specific practice of lymphatic massage to help drain the area as I developed temporary trunkal lymphedema. I started seeing someone who is trained in lymphatic massage and she helped my body figure out where the lymph will flow now that my upper quadrant lymphatic system has been compromised (as it was for each of us). Rads damaged the minor lymphatic structures in the treated area and stagnant lymph is what leads to fibrosis over time. Keeping things moving and re-establishing drainage helps our bodies to heal better than just letting things go.

My body asked for vibration in the treated area at the beginning of January (a month after finished rads) and I looked it up. Vibration is used to re-establish minor lymphatics and vascular structures in physical therapy. I figured out that a Clarisonic, a facial cleansing tool, is really great at helping with breast massage once you know how to do breast lymphatic massage post surgery. It has a soft brush and a fine vibration and is great as exfoliation if nothing else.


I used Earthsong pomegranate oil meant for breast massage occasionally. It comes with a booklet describing how to do breast massage though I advise working with someone who does lymphatic massage so you can know how to modify for your body post treatment.

skincare
I came up with a little routine to help care for my damaged skin, evidently it is permanently altered by radiation (see: Changes in biophysical properties of the skin following radiotherapy for breast cancer)

• Thorne DermaQOL lotion (currently discontinued as it is being rebranded) as a daily moisturizer
• Castor Oil - overnight a few days a week
• Vitamin E oil, occasionally

I use a facial cleansing cream from Aubrey Organics (http://www.aubrey-organics.com/ProductInfo/910.asp...) or the Clarisonic cleanser and the Clarisonic brush every other day on my irradiated area to help exfoliate for about 5 months (I used it a few times a month now). It was amazing how much lighter my treated area was after the first cleansing.


Fungal Infection Risk -- too much oil and broken skin can lead to fungal infections. Alternating Nystatin, vinegar and diluted oregano oil on bandaids for many weeks got rid of my infection. I got a fungal infection on my treated breast when I itched it and accidently broke the skin a tiny bit.

movement
I continued with dance practice and qigong at home, later returning to a qigong class. Full classes of other types would be too trying and I might tear something I felt.

I worked with a physical therapist on understanding how to work with my lymphedema. My PT noted that in some areas that were treated the muscle had adhered to the fascia. Also, my serratus muscle group was very pissed off post rads (why I had a sore side during treatment). He did myofascial release work on me; terribly painful but it worked amazingly well.


---

If you can manage the time and more appointments, definitely seek out professional treatment with any issues. My RO gave no post treatment instructions but with the first 6 months being the most critical to post radiation healing and tissue remodeling I wanted to do the very best I could.

PS - when I had my first post treatment physical exam at the breast clinic in June the NP couldn't believe how well I healed. Trust me I had a really bad reaction to rads, my breast surgeon couldn't believe it and I even put it together into a PPT she can train her residents with. You can do a lot but they don't know what it is, they won't suggest a damn thing. Do more.

Re: My leptomeningeal journey
 

Hi Agness! Is ur TMC Doctor in California? If so would you share his info? I am also looking for a good TMC so I don't have to travel back to China for that. Thanks!

Re: My leptomeningeal journey
 

My TCM is in Seattle. I can see if he knows anyone. He is well connected and well regarded.

Re: My leptomeningeal journey
 

--- part 8 ---

So I learned about naturopathic oncologists and got started with one before I started neoadjuvant chemo. He ran tests that my medical oncologist didn't, even when I told me MO that I was depleted there was nothing extra he was going to check -- my kidney and liver function was fine. But I was bad. In some ways I think I'm a perfect case of how bad things can be, how HER2 starts, since I was majorly depleted and it was the testing that my naturopathic onc did that showed what was wrong.

So we found out that I was low in zinc, magnesium, ferritin and vitamin D and my copper level was through the roof. Why? I kept asking myself how this happened and so I spent a lot of time researching how this imbalance occurred in my body.

Low zinc, that made sense about the elevated copper. These two elements are supposed to be closely linked together and they can both be high or low but too much of one could throw the other out of range. But why? Why was my copper level so high? Why was my zinc so low. And yet in my research elevated copper and low zinc was a common finding in women with breast cancer -- but then why didn't they check it at the cancer center?

My low magnesium, what was that about? I ate quite well, an organic diet with a decent amount of vegetables. How could I be so deficient? Was it from breastfeeding for seven years straight? But that was supposed to reduce my risk of breast cancer, right? I had read a ton about it and everything was like "breast is best" and "breastfeed as long as you want to" but it didn't seem like there was any evidence to back it up and most of the nutritional information is about nutritional availability for infants and very little ever spoke about the needs of the mother.

Then there were my bones. I knew that I really needed to restore from breastfeeding, even without the cancer and chemo experience -- but I was the only one on my team thinking about this. Bones come from magnesium, calcium, vitamin D, phosphorus -- vitamin K2 my physical therapist added. It was a decent combination I think.

I took supplements by the handful each day but still my serum magnesium was out of range. It turns out that the RBC magnesium is more like your ferritin, indicative of stores in the body. I got that checked late in the game after months of supplementing and it was still out of range. Serum magnesium is a really easy test to order and if it is low you can be damn sure that your magnesium stores are for crap.

So I researched more and what I found was really interesting.

Our adrenals are the cornerstone for mag-zinc availability. Chronic stress including: medications, dehydration, overexertion, work/life stress, extended illness cause the adrenals to produce elevated Aldosterone levels that cause the body to dump the more calming nutrients of zinc-mag.

This last point was the most salient for me -- chronic dehydration would make one's adrenals dump zinc and magnesium as the body tried to maintain homeostasis. I often thought to myself as I would breastfeed, given that my thirst was for naught, that I didn't know where the breastmilk was coming from. Now I knew and damn.

My naturopathic onc had me take 60 mg a day of zinc which boosted my zinc levels and lowered my copper levels.

Zinc is a key mineral in pancreatic function, including digestive enzyme production which helps your body absorb nutrients from the gut during digestion. We figured the digestive part by accident during chemo when taking probiotics and a good diet didn't help -- I had a bad stomachache. I was put on Similase digestive enzymes for months to aid with my digestion, my digestive enzymes were low. When my zinc levels improved my digestion became more stable.

Your pancreas, you know, the endocrine organ associated with insulin -- and then there was cancer being related to inflammation, glucose regulation issues, and besides my Chinese medicine diagnosis said that my pancreas (spleen in TCM) needed more support. Oy.

My magnesium though I had to work harder at. Another mom, a doctor, told me that it takes a long time to restore magnesium levels. Here is what I learned:

Epsom salt baths or foot baths -- your body will take in magnesium sulfate this way transdermally and it doesn't cause the digestive issues that supplements can cause.

Natural Calm magnesium powder mixed in a tall bottle of water sipped throughout the day is an easy way to get magnesium in. Take frequent small sips and it doesn't cause GI issues and it doesn't cause your body to lose calcium in your urine.

Magnesium is a key nutrient, essential to many biological processes and cornerstone to your body's ability to detox through the liver.

Magnesium is what makes chlorophyll green and it is most easily absorbed in small quantities taken frequently. Kinda makes sense because who would eat a ton of green things.

Taking coconut oil, a medium-chain-trigliceride, has been shown to improve absorption of magnesium.

When your magnesium level is low your body is unable/handicapped to activate vitamin D for utilization in the body -- even more active forms such as sunlight and D3 need magnesium to work.

When your magnesium level is low it disrupts calcium regulation across the body -- parathyroids, thyroid, bone, blood, gut are all involved as your body tries its best to keep things balanced. I have read that taking Vit D when your body is low can cause more problems for calcium regulation and hurt bones. It's really important to find out why it's low to start with.

Constipation is a symptom of low magnesium absorption -- if you are getting enough then you won't have a slow gut.

I have since learned that resistant starch also aids with the gut microbiota, increasing butyrate levels, improving magnesium and vitamin D absorption, and reducing the risk of developing cancer. Oh.


My naturopathic oncologist said I was doing way more than he would ever ask a patient to do, but he wasn't critical of my efforts. My friends in my cancer support group worried that I was taking too much blame for the development of my disease. Me, I just wanted to understand how I broke so that I could fix me.

[I'll add links later]

Re: My leptomeningeal journey
 

Thanks Ann.

Another very interesting & informative post.

Just read an interesting (although basic) report on
Dr Sircus.com/medicine/magnesium/calcium-magnesiumbalance

Re: My leptomeningeal journey
 

I have been telling the gals in my cancer group to get their levels checked for magnesium, copper and zinc forever and finally last week someone asked her doc to take a look at her magnesium level without saying why. The results came back low. She was HER2-/HR+ but still, these tests are very easy to get done and if you want to try to restore to a true state of health then you need to know. You have to fight this disease at every angle and fighting it metabolically with targeted nutrition and diet is key to retaining your health.

I watched as so many in my cancer group finished treatment and were like "now what?" They had no idea why they got cancer, they had no idea why they had the type they had, they knew nothing more than standard of care.

I went to see a world renowned specialist speak about triple negative breast cancer metabolism last spring, going on behalf of the TNBC gals in my cancer group. I was amazed that he went on and on about enzymatic reactions -- which are completely dependent on zinc -- which is way off typically in patients with TNBC. At the end I was the only one with questions practically speaking. I said, how can you talk about all these enzymatic reactions when zinc is typically very low in patients with TNBC and testing levels is not standard practice? He agreed that they didn't check and kind of couldn't answer my question. This, this man, was a world expert in this and yet he totally was missing the elephant in the room.

Re: My leptomeningeal journey
 

I have been researching thyroid problems because of my Daughters health issues. In doing so I have found out more about my situation as well. Calcium, Vit D, Magnesium, Zinc, Copper, Selenium etc repeatedly mentioned. Most of these not routinely checked here! I was surprised to find that my magnesium level well in range but Calcium low! I had expected both to be low. Now waiting on Vit D test result.
Its concerning that some connections are known but not acted on.

Re: My leptomeningeal journey
 

--- part 9 ---

I got my Herceptin ongoing just like every HER2 gal. Was tolerating it okay though it did slow hair growth and the runny nose this and worries about heart damage weren't much fun. Thankfully my echocardiograms were all perfect -- I even got a copy of all of them to be sure they weren't just placating me with the results (telling you it is good when the results are questionable for instance).

Then it was 3/4 of the way through the year, after about my 13th dose, I was driving home from the hospital and I had my first migraine with a visual aura where my vision was blocked by weird colors and shapes around the periphery. It was almost as if I had been staring into a bright light and was having an afterimage -- but it was the middle of the afternoon. I let my oncology nurse know and thankfully the episode passed within 15 minutes.

I got my 14th dose and my limbs began to ache, arms and leg bones were hurting so much day and night and it was disturbing my sleep. The oncology nurse said take ibuprofen. Ibuprofen? My there was deep pain and it was clearly coming from the Herceptin.

I started to research how they established Herceptin dosing schedules. They looked at two years versus one year. They looked at half a year versus a full year. They observed the least toxicity and the best patient outcomes with a year as an average. But some patients needed more, and some did fine with less -- they just never identified (for any number of reasons) which patients were which.

I don't know if you have noticed but they say HER2 shows up in about 1/5 of the population of breast cancer patients -- about 20% of the time. What many studies failed to do was separate out those who are ER+ from those who are not -- we are each about 10% of the total of breast cancer patients. This affects each of us in that some patients will respond to certain treatments and some won't. Some patients are more likely to develop certain types of mets. It is very logical really but they make you feel like it isn't. That is because the research collection to this point has been quite poor.

TCHP was developed by taking as established protocol, TCH (developed out of UCLA) and tacking Perjeta on to it when it was approved to treat early stage, locally advanced HER2+ patients who were getting neoadjuvant chemo. It was never studied in this population, but the FDA took a chance. I'm grateful that they took that chance for all my HER2 sisters since it was started in use in September/October 2013. I started in March 2014, about 6 months later. This early adoption was why I found no medical research articles about use of or significance of the addition of Perjeta.

In the breastcancer.org forum I started a compilation of patient results, I wanted to understand how well it was working out for us this unstudied TCHP. I compiled a statistically significant number of 35 persons this past summer (2015) and found that if you were HR- you had a slightly greater chance of a PCR, but that it was really split between those that did after 6 rounds and those that didn't -- you had almost the same chance of having a PCR if you were HR- as HR+. This tells me that there are subtypes for each of these designations. Even for those who didn't have a PCR there was significant shrinkage though, which is great because any disease diminishment increases overall survival.

The earliest studies looking at neoadjuvant TCHP are due out in Summer 2016 when the first patients will be about three years in and early overall survival stats will start to become evident. When the big ASCO and SABCS meetings happen more articles are published each time with more findings about Perjeta (Pertuzumab). Take a look at PubMed if you are interested in the latest.

So, back to me. Dose 15 more aching. It was awful. I went back and forth. I thought really hard about it. Finally I decided, with some agony, that I should stop at dose 16 instead of 18. I told my medical oncologist with all the information that we had so far about my health and the PCR that if my HER2 was going to come back it was going to be in spite of treatment and two doses wasn't going to make a difference.

Those words were quite prescient on my part and I hear them echo over and over since my brain mets diagnosis.

Re: My leptomeningeal journey
 

ann, you are an exceptional woman. You are going to get exceptional results. Thank you for sharing your journey. Warm regards, letranger

Re: My leptomeningeal journey
 

Hi Ann, Thanks for sharing your story in full here. It is an amazing story and you are a truly amazing woman. I wish you NED and a long and happy life.

I hope you don't mind me putting my oar in here, but there is one aspect of how HER2+ breast cancer works that you mention but what you say is really unclear to me. It is an area that is not understood by many people. It is how people become resistant to the HER2+ targeted therapies/humanised mouse antibody drugs like Trastuzumab.
You say:
I had my brain tumor tissue tested a month ago by Foundation One, facilitated by my naturopathic oncologist. I do not show any genes of resistance to targeted therapies.

Could you explain what you mean by "genes of resistance to targeted therapies?" because this does not make sense to me in view of how I understand that resistance to these therapies occurs?

As I am sure we all know, these drugs work by blocking off the HER2+receptors so that human growth factor cannot attach to the receptors and thus cannot activate pathways involved in various aspect of tumor growth, invasive change, and spread etc. Blocking the process at this level prevents the activation of the next level of signalling pathways.
"Becoming resistant" to these drugs means that the tumor cells have mutated (i.e. have developed different daughter cells that the drugs cannot damage in the same way. The tumor cells may for example have truncated HER2+ receptors that Trastuzumab cannot block off, or changed in other ways that enable them to now continue to function or partly function despite the presence of the anticancer drug which killed the original tumor cells. They divide these into 3 groups:

Pathway redundancy—the ability of a signaling pathway to remain activated, despite being inhibited by a targeted therapy;

Escape pathways—in this scenario, even if the signaling pathway is inhibited, a cell could recruit an alternate signaling pathway and escape the effects of a targeted therapy; and

Pathway reactivation—essentially, the ability of a cell to reactivate the signaling pathway via mutations within the downstream receptor layer, despite the presence of inhibitory therapy.

But the part few people are aware of is that these mutations are not determined by your own genes or by the genes of the tumor cells. They are new forms that come into being because some of our tumor cells are stem-cell-like, and are thus able to alter their own genes to new pattern not contained in our own genomes or in the genes of the original tumor cells. This means they can form daughter-cells that are different to their own, which can then become a new proto-type tumor cell that flourishes because it is not affected by the trastuzumab.

How does this relate to the testing of your tumor for genes of resistance?

This is scary, but I understand this is part of why they found that adding Perjeta to Herceptin had a better result: it blocked more signalling pathways, so it is harder for the tumor to come up with mutations that are not already being blocked.
Please check out this research article as it seems to be really on the money with a real message of hope for all of us as far as I can see:
Curr Stem Cell Res Ther. 2015;10(3):271-82.
Role of flavonoids in future anticancer therapy by eliminating the cancer stem cells.
Sak K1, Everaus H.
This is a fascinating bit of research about tumor stem-cells, in which the researchers also identified that there are substances in common foods that also help to destroy tumor stem-cells in particular isothiocyanates and sulforaphane in broccoli and other cruciferous vegetables, soy, curcumin in turmeric, Epigallocatechin-3-gallate (EGCG) in green tea. I will paste the abstract on the end of this post.
Abstract
Despite the numerous recent advances made in conventional anticancer therapies, metastasis and recurrence still remain the major problems in cancer management. The current treatment modalities kill the bulk of the tumor, leaving cancer stem cells behind and therefore, the agents specifically targeting this cancer initiating cell population may have important clinical implications. In this review article, the data about the inhibitory action of flavonoids, both natural as well as their synthetic derivatives, on the self-renewal capacity and survival of cancer stem cells of different origins are compiled and analyzed. These data indicate that several plant secondary metabolites, including soy isoflavone genistein, green tea catechins and a widely distributed flavonol quercetin, have the potential to suppress the stemness markers and properties, traits of the epithelial-to-mesenchymal transition and migratory characteristics, being also able to sensitize these cells to the standard chemotherapeutic drugs. These polyphenolic compounds act through multiple signal transduction pathways, providing thus the maximal therapeutic response and offering some promise to be included in the future cancer treatment schemes in combination with the conventional therapies. Such approach may give an important contribution to the shift of cancer management from palliative to curative mode, likely leading to the disease-free survival. Thus, flavonoids can serve as attractive candidates for novel anticancer agents by eliminating the roots of cancer.

Re: My leptomeningeal journey
 

--- part 10 ---

In April 2015, 8 months after finishing neoadjuvant TCHP, about three months after finishing systemic adjuvant Herceptin treatment, I stood up which gardening and felt dizzy. I spoke to my mother on the phone who told me that was just part of getting old. "But I haven't been dizzy before, why am I dizzy now?"

A couple weeks went by and the systems didn't abate so I saw my GP. Chemo might have caused blood pressure issues, perhaps that was it. He diagnosed an issue with my middle ear, which was correct in a way, but it wasn't all of it. I also never had middle ear issues before.

I saw all of my complementary care providers over the coming weeks and I continued my decline, but it was a slow decline and it made it difficult to appreciate what was happening. I should add that I didn't expect my complementary providers to diagnose a brain tumor, or even cancer, they were just there to help keep me from falling apart.

The challenging things were that I had whiplash in 2000 on the right side of my spine that would periodically act up which is why I saw a chiropractor. I also had a tipped pelvis that happened along the way, and then I slammed my right knee into an open low drawer last spring -- it made it really hard to know what was triggering what.

I saw my GP later and after mentioning that my chiro saw a pinched occipital nerve and my GP diagnosed me with occipital neuralgia. I joined an occipital neuralgia group on Facebook. He gave me Amiltriptylene, a neuro sedative that made it hard to wake up and take care of my kids. I didn't take it.

My MO and RO I saw and mentioned my stiff neck and shoulder to, they are at separate treatment centers and they both blew me off. Other people were taking care of these things, it was still never suggested that I might have cancer in my central nervous system.

So I wasn't going to go back to see the RO (she was an ass anyway) and the MO was about to retire. I asked both he and the GP if my GP could do my follow-up care, with guidance as he wasn't familiar with oncology. I have to believe that in spite of my MO agreeing with this that he never spoke to my GP or else the significance of my neck pain might have come up. Either way, total negligence.

My GP went on vacation and I saw a substitute GP, I was feeling worse and could not drive so I had a friend take me to the clinic at the hospital. The substitute gave me a bottle of Gabapentin, another drug for neurological disorders, but never suggested a brain or neck MRI. I got worse that weekend. Was this when you went to the ER? I was really sick. I finally sent an email to my breast surgeon who I am friendly with and she is very responsive to email. She said she would see me the next morning. I had my friend drive me and after an exam the surgeon had me admitted through the ER and later that day I had a neck MRI. The attending docs said, "do you want to get a loved one here or on the phone" and I thought it must be something really dire -- like a brain aneurysm or something acute. Oh, wait. I'm a cancer patient. "No, you can tell me, I've been all the dark places already." Then they proceeded to tell me about the large cerebellar tumor that they could only see a part of in the neck MRI.

In some ways this was a big relief. There was a reason I felt so awful and I was getting worse. But then it meant that for about 6 months I had uncontrolled cancer growing in my central nervous system -- what if it spread all over again. This was bad. It was also bad for my kids and family. I had an emergency craniotomy. I thought I was done for but I had an amazing comeback. The cerebellum is less essential to functioning and with my background in dance training movement synchronization was even more distributed.

Each day after that though, it was a blessing. I was in overtime.


Here's my soft list of cerebellar mets symptoms in increasing complexity in case it helps:

- Dizziness
- Loss of balance
- Increased pain upon waking, took a while to get used to sitting upright
- Sore neck and shoulder where I never injured them before
- Inability to carry a purse
- Symptoms of occipital and trigeminal neuralgia - driving pain sensations on right side of head and face
- difficulty walking
- need to keep head in straight, neutral position, started wearing neck brace
- inability to sleep flat on back
- needing to use ice pack on back of head to control pain
- increasing symptoms of pain and nausea
- uncontrollable nausea
- inability to self-care
- loss of appetite

Re: My leptomeningeal journey
 

--- part 11 ---

After I had my brain tumor removed it was a weird time. My kids were off for the week with their dad, my parents were caring for me, I was walking slowly, I had increased ear ringing, it was so hot and dry and everything seemed surreal. I thought I was dying but then I looked up the side effects of the dexamethasone that I had been on and it matched up to be related including muscle wasting, acne, and more. Oh, well that is good to know. Actually while the dexamethasone saved my life at the hospital I knew that it wasn't good to be on it long-term. It depressed the immune system and increases blood and CSF glucose levels -- totally bad for cancer. I weaned down quickly and a friend who's wife died of primary brain cancer sent me some links about Boswellia Serreta which also reduces cerebral edema without the side effects. I asked my naturopathic oncologist about it and decided to take the plunge, I could always take more dexa if I needed and frankly my threshold for cerebral edema was really quite high at that point. I found that taking 6-8 caplets a day (two per dose) was equavalent to 4-8 mg of dexa per day. You can also mix the two to get the benefits of each and not have the side effects which was good to know. The Boswellia had an added benefit in that it also is used to treat arthritis and my bone and PET scans that were done after my brain surgery showed pre-arthritis in my shoulders from chemo.

Evidently if I had rads to the tumor before surgery then there would be less of a chance of disease spread when they operated on me but we didn't have that chance at the time as my disease was so progressed.

I started researching a ton and delved more into this board, Inspire.com, joined the breastcancer.org brain mets board, and read a ton of research about cerebellar mets.

Basically anyone with brain mets is dealing with an under-researched condition. They historically excluded patients with brain mets from drug trials and couldn't even decide on how to measure any improvement in disease progression until pretty recently. Cerebellar mets and HER2 brain mets seemed to be something that you would expect to find more about and yet there wasn't that much out there. The ASCO recommendations for HER2 brain mets from 2014 rather embarrassingly were based not on studies but on what they thought was working best. Oy.

I have since read that there is a 40% chance of developing leptomeningeal mets if you have surgery in the posterior fossa, the area of the brain where the cerebellum resides. This was never mentioned. I read the stories here and on the http://www.brainmetsbc.org/ site about treating brain mets and I asked my team to do more. They were hesitant. I said I have young boys, this isn't a game to me. They wanted to wait and see. They didn't know about that increased risk of leptomeningitis for me.

I arranged to have LINAC SRS to the tumor bed -- the neuro-onc said 4-6 weeks after surgery. I don't think it made a stitch of difference in my outcome now, but maybe in the tumor bed itself. I had 5 fractions and did water-based fasting during treatment to try to increase its efficacy. My hair fell out in the treated area a couple weeks after treatment started as I was told. A bummer but from the front you could still see nothing, I was still just me.

In October I went down to see a HER2 brain mets researcher at UCLA. There was no accounting for the fact that I had a pathologically complete response to neoadjuvant chemotherapy either. I had mets and that was the end of the story. The MO said that she would have me take lap/cap or kadcyla for the rest of my life, probably starting with lap/cap (Tykerb/Xeloda -- see Landscape trial of 2013) since my brain was my first site of mets. We felt discouraged but knowledgeable.

My team in Seattle still said wait and see. They could put me on drugs that would make me sick or they could just wait and see what I was dealing with. I was given a 50% chance of living longer than two years -- and they thought those were good odds.

I had no presentation of disease but I was completely expecting the other shoe to drop. I decided to just sit tight and enjoy my kids because nothing was coming too easily.

Re: My leptomeningeal journey
 

--- part 12 ---

After my brain surgery from everything I could gather from my team and my research I learned that there was a high risk of my brain mets coming back and that there was a dearth of information about cerebellar mets. The more I looked and my father looked the more it was impressed on us that they just don't know. The more I spoke to professionals the more I realized that they don't know either and I became embarrassed for them, honestly, to be practicing in this prestigious field of neuroscience and yet at the same time completely hand-wringing about the blood brain barrier.

My recovery from surgery and brain SRS was amazing actually. They said my balance might be off, that I might need to walk with a cane. Instead I bounced back with great energy and was practicing qigong and ballet at home. We were amazed at how well I was doing.

I knew I should speak to more specialists and I tracked down HER2 brain mets researchers at UCLA and UCSF. I downloaded and compiled all my records and shared them with my dad who noticed that the 9/3 treatment planning brain MRI for my SRS said this:

"Post resection of the right cerebellar metastasis, new nodular/mass-like contrast enhancement within the resection cavity.
Given the enhancement characteristics of the original tumor and the
morphology of this enhancement, local recurrence of the metastasis is
suspected"

I asked my team about it and they said, yes we always have the radiologist review the imaging but we often disagree. It was a brain tumor oncology team that was telling me this, the radiologist didn't know what they were seeing obviously. Right?

So I sent my records off and a few weeks after SRS I went and spoke to a specialist who said "sure, I would let you get on systemic therapy for HER2 brain mets. It isn't standard of care but sure, I would give you lap/cap (Tykerb/Xeloda) or Kadcyla (TDM-1)" She said I would be on them for the rest of my life and both treatment regimes come with toxicity side effects. She referenced the Landscape trial from France (2013) that was the closest to my case. (get a full copy of the report if you are interested, there's a lot more than just the abstract). I asked about my PCR to neoadjuvant treatment and she said it means nothing, you are metastatic and, basically that's my lot. I had a hunch that it had just never been studied and so it didn't mean nothing, it meant they knew nothing. It was discouraging but eye-opening in many ways.

Okay then, so I feel better than ever, I bounced back, I'm taking care of my young boys, my neuro-onc team doesn't want to do anything, the consultant says I can get on treatment for the rest of my life. This doesn't sound like a win-win or anything easy for someone to navigate under the best of circumstances.

My neuro-onc does a post-treatment MRI sooner after SRS than is standard practice, in order to see if it worked. Even the doc at UCLA said "that's so soon". So six weeks after I finished SRS I had another brain MRI. This time the results were even more weird and my neuro-onc said, it's either atypical leptomeningeal spread or else its atypical swelling. She said I had atypical swelling at the surgical site after my craniotomy so maybe it was me. She asked about symptoms and I said that I had pain on my facial nerves, roving pains and numbness. That's not what we are looking for she told me. It wasn't what she was looking for but it wasn't normal for me, it was similar to pains I had from my original brain tumor and they were increasing -- but it wasn't brain tumor?

My head was reeling -- I either have a dire diagnosis or its nothing. I cried. They told me we have to rescan in a month and see what happens. How fast does HER2 grow in the CNS I wondered. If it was just swelling they gave me no instructions for things I could do to help my brain heal (I have a list that I will post, of course I do, and I'm happy to share). So I again found myself in the position of waiting for the other shoe to drop.

Re: My leptomeningeal journey
 

Agness, this reads like a gripping novel! Thank you for sharing. I look forward to reading all your posts.
I get brain mris quite frequently, every 6 weeks, yeah I'm not too crazy about the gallodinium overload, but it seems like the lesser of 2 evils. Anyways, I continually ask if there is evidence of LM. In one of my reports, the radiologist wrote "no evidence of leptomeningeal disease" and "brain stem spared". Each report is a written up a little differently. And in one he wrote, "clinical trial drugs not working."
So, I'm trying to read the reports as carefully as I can and look for any evidence of major change. Of course, under RECIST I have been classified as stable. Nope, not good enough so onto the next drug.
All my best, letranger

Re: My leptomeningeal journey
 

--- part 13 ---

(you have probably been waiting for me to continue, well here goes )

I had symptoms of occipital and trigeminal neuralgia from my original cerebellar tumor that were misdiagnosed. I joined boards for patients who had neck and facial pain and you should know that they are out there and their condition is referred to as "the suicide disease" and they should have your utmost sympathy as well. It turns out that these conditions are a subset of symptoms of a cerebellar metastasis -- but docs are told to look for symptoms of brain involvement that look like stroke, they totally don't get the back of the brain at all. Welcome to the world of the undiagnosed, misdiagnosed breast cancer patients.

After my crainiotomy at the end of July, where I almost died before they figured out I had this huge tumor in my head, I rebounded really well. While the cerebellum is responsible for movement coordination and synchronization, if you grew up doing movement studies at all then your brain distributed the functions around your brain and the cerebellum is important but not as critical. My starting to study dance at age 5 was suddenly a huge gift. I used ballet barre and qigong all the way through to help recover from initial treatment and to deal with having had my head cracked open.

In October I saw the neuro-onc, symptoms of trigeminal neuralgia were there again and increasing. "No, that isn't what we are looking for" she told me. I went home with stabbing pains in my right face and numbness in my cheek and still it was getting a bit worse. "Who am I supposed to see about this if not you?", I asked her and she agreed that it was her area and she would keep tabs on it. I keep hearing that in my head now, "that isn't what we are looking for" and it is so wrong.

Just after Thanksgiving I had my follow up brain MRI and low and behold, what they had been unwilling to see and diagnose me with in the months before was suddenly clear - I had leptomeningeal spread of my brain tumor. Great. So now we go from a diagnosis presumption of "atypical inflammation" to an absolute worst case scenario. Not only that but a few weeks before my medical oncologist told me I was getting too involved in my care. If I waited for her I would be dead.

I couple days went by, a lot of tears on my part and I didn't have the heart to tell my kids. I didn't know what to tell them. But still no plan for addressing the LM. Hello? On the fourth day my body had enough and I had swelling on the right side of my brain (yes I'm quite good at knowing when I have cerebral edema now), a stiff neck and my right eye felt puffy and had pressure. I said I don't know what the bad thing is that you are waiting for but my body has had enough. I called early in the morning and told them before office hours in a voice message that I was going to the ER and they called back once they were in the office and agreed. They said they let the ER know I was coming. I dropped my son at kindergarten and had a friend drive me to the hospital where I spent the next three days.

Do you know that I passed every single neurological assessment at the hospital. I was checked up and down, this way and that, in every department there was a check -- I passed them all with flying colors. This time I was onto them and I told them, I've always been atypical and I will pass all of your tests but I have cancer in my head, it is very clear that there is cancer in my head and I want IT Herceptin.

Re: My leptomeningeal journey
 

--- part 14 --

On Friday December 4, 2015 I had my first dose of IV Kadcyla and once that finished up in pre-op they wheeled me into neurosurgery to have a pediatric Ommaya Reservoir placed in my head. My family and friends were freaking out that I was having surgery and in the hospital again but for me it was what needed to be done -- and probably should have started sooner.

I definately recommend getting the pediatric sized Ommaya if you can swing it, it is much smaller and no one can see it. I do have a scar from the cut into my scalp but you can't tell. Oh, and they don't have to shave your head either, it takes a new surgeon to be willing to do this and you have to push for it -- tell every person on the surgical team that you don't want your hair cut and they can goop you up with vaseline instead. I think their rare concern is with meningitis but I'm healthy and strong so it wasn't an issue for me. Why not cut your hair? I'm of the opinion that anything that helps your body feel stronger, healthier, more normal can only help you to fight cancer better. When we are downtrodden, let them take us from ourselves without thinking about it we aren't as strong. Fight for your body and yourself. Fight to be treated as a person. Have them err on the side of being conservative with your body, not medically, they aren't the same thing. It's about treating the cancer and not messing up your body, or doing the least amount of damage possible.

What can I tell you about the Ommaya Reservoir...

The Ommaya Reservoir is a type of port into the skull and brain, used to deliver chemotherapy agents into the central nervous system. It was developed by Dr Ommaya for use in pediatric patients, some of whom present with cancer types such as leukemia that are likely to spread into the CNS and for which intrathecal therapy may be beneficial. If you watch the start of the documentary "Cancer: The Emperor of All Maladies" the pediatric oncology team is actually discussing placing an Ommaya port into the toddler in the first parts.

The brain has no opening, no easy access points. Over the years neurosurgeons have learned that there is an area on the right brain that has less activity, that is between more critical areas. It is through this area that they place the Ommaya catheter, to position delivery of the drugs deep into the center of the brain where the spinal fluid is generated. They also use it to place shunts and stuff when folks have hydrocephalus or meningitis or brain mets -- but only some kinds.

It did hurt, gave me a headache for a couple of weeks where I had to use hydrocodone and Tylenol. The area that had been injured hurt in my right forebrain and I had an odd pressure behind my right eye -- but it didn't feel the same as the cancer did when it was causing pressure to my eye. Doing movement hurt too -- I guess I proved that your brain really does move around when you are doing activities.

I had to treat myself as if I had a brain injury -- because I really did. I took extra omega-3 and tried to get extra rest but it was a long month. Plus the ketogenic diet I switched to also at the start of December also is known to cause alterations to the sleep pattern. After the first two weeks the pain settled down a lot and now it just feels weird when I get dosed intrathecally.

What I learned from experimenting on myself, with some sage advice from others who have dealt with LM is this:

- drink an extra liter of water on days when you receive IT treatment. You don't want to be dehydrated at all, you are introducing drugs right into the CNS and you want to stave off chemical meningitis
- steroids help reduce headaches and inflammation -- I have not gotten IT steroids so I found that taking 2-4 mg of dexamethasone a few hours before treatment helped tremendously
- extra strength tylenol - I would take 500 mg with the dex, about 2 hours before being treated and I wouldn't get a headache
- boswellia serreta -- I take this every day since surgery last summer. It is commonly used for arthritis but it also help reduce cerebral edema -- chemo messed with my body and caused some subclinical pre-arthritis in my body. I take 600 mg 2-3 times a day and so I include it in my ommaya headache helpers.

What frustrated me to no end was that IT Herceptin is new and not well documented, plus brain mets and LM are completely underresearched. When I tried to tell my neuro-onc what was helping me she instead decided that I was masking symptoms of mets inside (not outside) of my cerebellum and learned not a damn thing from me, the patient. You know, the actual person with a hole in her head and an awful diagnosis. No wonder neuro-oncology is so far behind, I am constantly amazed by how lame they are and it further reinforces to me that I need to be my own advocate because on their own they will try to kill me with the same-old, same-old and the path is littered with corpses to attest to that.

About Your Ommaya Reservoir Placement Surgery for Pediatric Patients
https://www.mskcc.org/cancer-care/patient-education/about-your-ommaya-reser voir-placement-surgery

Re: My leptomeningeal journey
 

Agness - Thank you for sharing your story. I have read only snippets on Inspire and BCO. I hope things are going well for you now.

Re: My leptomeningeal journey
 

--- part 15 ---

My first brain scan after starting IT Herceptin was a month later. While my symptoms of facial nerve pain resolved within a week of starting treatment the scan showed disease "pooling" in pockets around the cerebellum, predominantly on the right side.

My neuro-onc said "it doesn't look like anything is getting in there", there meaning the posterior fossa, the lower chamber of the brain where the brain stem and cerebellum reside under the tentorium, a rigid membrane separating it from the cerebral cortex. "Nothing?" I said. "We are doing IV Kadcyla, IT Herceptin and I switched to a ketogenic diet and nothing is influencing anything?" I was in disbelief to be honest.

MRIs cannot see less than 109 cells, so there has to be disease massing for it to be seen but my disease progression was dismissed for months even as it was evidently growing as a film on my brain. I learned after neoadjuvant TCHP that MRI also can't tell the difference between tumor and active scar tissue formation -- the lymph node that lit up after 6 rounds of treatment -- it was just scar tissue at surgery.

I kept asking for more details, how could they know there was no scar tissue if it looks the same, scar tissue is also larger mass-wise than tumor based on my presentation, couldn't they do a metabolic scan (PET-MRI) of the brain to see if there was any effect of treatment? I was told no, that whole brain radiation was my only option.

So now I'm going from months of being told "we don't want to hurt you" and watchful waiting to "your only option is to nuke your head". Yes, sometimes whole brain radiation is the only option but recent studies show that as patient live longer that they are experiencing the serious cognitive side effects of whole brain radiation.

I had heard that rarely, but it had been done before, that they could just irradiate the cerebellum. My oncology team wouldn't budge though. My partner was like if whole brain is the only option then we are going to talk to more people. And so we did.

I was told that without treatment that I had about 4-5 months before a steep decline, and that was after I tracked down a new radiosurgeon who was willing to think outside of the box. She is unusual in that she is very familiar with radiation technologies as she had been involved with LINAC, gamma knife, cyberknife, tomotherapy, and even proton therapy in her professional life. She felt that for my case either tomo or proton was the best option both now and going forward should I need re-treatment.

Since I didn't have time to wait to see if the 100 mg dosage of IT Herceptin was going to penetrate deep into the pooled disease we opted to go for partial brain radiation. I had four weeks of daily rads to the back of my head, plus the edge of my occipital lobe and my brain stem to C2. A very uncomfortable 2-hour spinal MRI ruled out disease spread there -- plus I have 4 spinal fluid tests that show no evidence of disease spread.

What happened to me is rare but not unheard of and it could have been anticipated. The fact that I was even discussing leptomeningeal disease didn't influence the conversation at all from the beginning --though it wasn't like I was saying what if I have an aneurysm or something. I think they just don't know and so they are blind to the evidence in front of them.

The really sad part is that when I look back at standards for screening for brain mets in HER2 gals that by the time I started to have symptoms last spring that I was always going to need a craniotomy and that very likely I was also always going to need to have my cerebellum irradiated -- we just moved out the treatment of those conditions by a few months.

Throughout my recently brain rads and going forward I am now undergoing weekly craniosacral massage to keep tissues open and flowing (the posterior fossa is a confined space, they worry about pressure), also weekly vitamin C plus mineral infusions (at an outside facility), continued weekly acupuncture, and nutritional supplements under guidance of my naturopathic oncolgist. I resume IT Herceptin today.

My next brain scan is in a few weeks and I will report back on what the findings are. It will still be early but hopefully the keto diet, 18/6 fasting and every other damn thing I threw at it made the rads as effective as it could be -- plus my September LINAC seems like it worked locally where the tumor bed was, so there's a bit of evidence that my cancer mutation is susceptible to rads.

Re: My leptomeningeal journey
 

I had my first cerebrospinal fluid labs run this week, the first since early December.

The spinal fluid was clear, colorless and showed no debris. There were no red or white blood cells so no bleeding or infection. My glucose was high and my protein level very low. No circulating tumor cells were observed.

With my cancer having spread from the original brain tumor site and growing on the outside of my brain there was concern that the disease can spread anywhere. Cancer cells will suck down glucose and shed protein -- but that isn't happening in me. Thankfully my results are brilliantly normal with no signs of disease.

Hooray for small blessings!

I will have four scans in the next few weeks: brain and spinal MRIs, PET (metabolic scan with radioactive glucose) and torso CT. They want to restage me now that I've had brain rads, to help guide treatment going forward. Hopefully having drugs put into my spinal fluid plus partial brain rads and everything else I've done has helped kick the disease. I will keep you posted.

PS - Three oncologists have told me they have seen HER2 in patients who were systemically negative, go back out of the CNS to infect the rest of the body. I haven't found any articles about this but I think that these docs at Seattle Cancer Care, UW Medicine and UCLA Health are speaking a truth we need to know.

Re: My leptomeningeal journey
 

That's great news, Ann! Hang in there, and keep us posted.

Re: My leptomeningeal journey
 

Agness,

So good to hear that you are doing so well! I'm super happy for you and your family. Hoping your upcoming scans provide continued good news for you.

Take care,
Brenda

Re: My leptomeningeal journey
 

I had my first scans this past week since my 12/28/15 scan showed progression and my oncologist said "nothing is working" and I was recommended to have whole brain radiation.

I had a PET/CT and then MRI of the brain and spine. There are no new lesions. In the area where there was disease, in my cerebellum, there was a significant reduction in contrast enhancement and far less LM. This was amazing to see just 5-6 weeks after finishing the non-standard partial brain rads to the posterior fossa region (cerebellum, brain stem, edge of occipital lobe).

I worked up from 30 mg IT Herceptin twice weekly to 100 mg once weekly, stopping during brain rads and resuming treatment the next week. I started my modified ketogenic diet in December and I did intermittent fasting during rads. I also have had weekly 25 mg of IV vitamin C plus minerals, weekly craniosacral massage to my head and neck to keep the treated area open and draining well. I continue with my Chinese herbs, nutritional supplements based on my blood labs and what was being treated. I also have done citrus oils and zest, cannabidoil, soapberry fruits, cottage cheese and flax oil, meditation (some), and been working on my chakras (going where no Ann has gone before, I figured why not).

Amazingly it is all working. I'm in disbelief but relieved to finally get some good news after months of poor scans showing progression. My next brain and spine MRI will be in two months and I will continue weekly IT Herceptin until then, plus my keto diet and the complementary and alternative stuff. I'm not NED but I'm closer than I've been for more than two years.

Fingers crossed, wish me luck.

Re: My leptomeningeal journey
 

Very glad to read good news. Stay wrapped in that place!

Re: My leptomeningeal journey
 

Wonderful news!

Re: My leptomeningeal journey
 

Hi,

Sorry I haven't posted an update in a while. After my first post brain rads scan and spinal fluid test came back clear of progression with no signs of disease, greatly reduced areas of uptake and presumed areas just showing "treatment effect" I ended up going into a phase of brain healing referred to as early onset. It basically involved suddenly needing to sleep more. Like 9 hours at night instead of 6-7 and needing to have a 1-3 hour nap in the afternoon. It was kind of crazy feeling. I'm glad I had the good scans before that happened or I would have been freaked beyond belief.

Soon after, partly because I was out of supplements and hadn't gotten to the store, I stopped taking Boswelya Plus for a week. I remember standing in the kitchen and turning quickly and the room kept spinning for a second. Ack! My doctor and my physical therapist both thought that sounded more like brain swelling so I got back on boswellia and low dose dexamethasone until the symptoms went away.

Then it was April and my kindergartner spent his spring break with a bad case of the flu. Unfortunately I subsequently caught it as well. Coming off of brain rads it felt a lot worse in ways than normal. My head felt worse. I found references that rarely influenza could cause encephalophy (brain inflammation). I let my docs know what was up and my concerns that my injured brain was being hit extra hard. I was firm that I didn't think I had encephalitis but rather that it was possible that my brain might feel the viral infection more. My RO said that while it hadn't been proved he didn't doubt, having had the flu himself, that it was possible. More sleep ensued.

Then one night my brain kept repeating to me while I slept, "Not right, something's not right. Not right. Not right." It didn't seem like cancer, somehow that wasn't what I was feeling. I couldn't tell what was wrong. Then I had sudden onset of positional headaches (head hurts at certain different angles) and it brought back bad memories of my brain tumor symptoms from last year, before my craniotomy. My partner and I were concerned. My neuro-onc said try dex for a few days; it didn't really do anything. My nose and front teeth started hurting me and I told my docs but they didn't know. I told my dad, a retired dentist and he didn't know either. My craniosacral therapist said that there was something transferring pain through my sphenoid bone. I mentioned this to my neuro-onc and still nothing. Since the dex didn't due anything to relieve my discomfort my neuro-onc felt pretty confident that it wasn't brain mets progression causing the symptoms, it was musculoskeletal.

We decided to move up my second post rads brain scan by a week to see what was going on. My brain scan looked awesome, no new disease and basically like it was before. She said to me, "unfortunately you have a blaring sinus infection." Doh! How was this possible as my sinuses weren't hurting and irrigating them didn't do anything. It was the sphenoid sinus -- in the sphenoid bone (!) -- in the middle of the skull. Basically its the worst possible sinus infection you can get because your optic nerves run through that area and your carotid arteries pass through the area. An unchecked infection can blind you and kill you. Nice.

I was started on Auguamentin, an antiobiotic right away and she sent me to an ENT (ear-nose-throat) specialist for a follow up. It was a funny follow up as most people with sphenoid sinus infections have issues and vague symptoms for many months before it is diagnosed. In my case mine was diagnosed by a brain MRI and very soon after it started (within two weeks). Also, while normally this sinus infection is extremely serious, given my brain mets and all that it was a huge relief to have a condition that was treatable. The imaging used to get clear pics of sphenoid sinus infections is actually a CT scan of the head so I had to go up to imaging again (add that additional scan to the many I've had in the past year). There was just a little bit of crud left so, since I was tolerating the antibiotics well, we did a second course just to make sure it was all cleared up. She said she normally might let the patient's body resolve the last bit but in my case she didn't want to take any chances. Thankfully within 24 hours of starting the antibiotics my energy level lifted tremendously and I have had no further issues (knock on wood).

My white blood cell count was just outside of range, I'm guessing that between having my sternum irradiated in 2014 and then my skull, plus neoadjuvant chemo hurting my bone marrow (oh yes it did) that my blood production has been compromised. The things they don't tell you -- and why us HER2 gals need to press for less treatment if we can in the future because I could do without cancer treatment damage, especially since it doesn't look like it helped at all (chest wall rads after a PCR).

Over the past month I have been cycling a bit in the neighborhood, walking the boys to the park, not having to nap so much -- though I'm still super tired at night by 9pm. I get around 6-8 hours of sleep most nights, sometimes disrupted but more usually during my luteal phase as it has been since I was breastfeeding -- it seems to be hormonally related. In the past couple of weeks my body said it was okay to go walk a half mile each way to the neighbor's place to buy fresh eggs and also to do part of my dance workout.

Where I see my cerebellum still faltering is in jumping down -- my body/brain can't predict as well where the ground is so I land a little hard. My craniosacral therapist suggested using a low raised surface, such as a step, and to go up and down on it several times to acquaint my brain with the height and then to jump down. I have been doing this all week and I've even been able to step up and down and to jump down some with my eyes closed even.

I'm pretty excited to still be here a year later after I first started getting balance and nausea, especially considering how the last year played out. I can't believe how well I'm feeling. My one doc said I get all the credit for my treatment seeming to work so well. My MO referred to my treatment as very non-standard in an amazed way -- she's at a research hospital. My neuro-onc can't believe how well I'm doing. It's nice to be beating the odds.

My kids? The younger one just finished kindergarten and is on the cusp of being able to read. The older one finishes third grade tomorrow and brought home a great report card. How nice that in the midst of all the nightmare of cancer and its treatment that my boys are thriving, bright, and healthy.

Me, I'm committed to helping patients whenever I can. It's a deal I made with the Higher Power when I was in the hospital last July before my brain surgery. I am here for a reason, this happened to me so I can help others.

PS - next CT and/or PET scan at the end of the month, next brain and spine scan in a month. I switched in the past month from weekly IT Herceptin (100 mg) to twice monthly and I think after the next scans we likely will switch again to every three weeks. We are doing a CSF check after each shift to make sure we are correct in our understanding of my body and cancer's response to the IT treatment.

Re: My leptomeningeal journey
 

I was wondering how you were doing. So happy for the update and to see that you and your family are doing so well. I believe that you have already helped so many of us by sharing your story. Your commitment to fight this disease and "stop at nothing" is truly evident in the way you have managed your disease. I wish you continued good health.

Re: My leptomeningeal journey
 

Tomorrow, 7/20, is the year anniversary of the discovery of my cerebellar tumor. Here's to making it one full year.

PET/CT from eyes to knees a couple weeks ago was clear again.

Shifted to IT Herceptin on the third week and we did a spinal fluid check, clear again with low protein and high glucose and no cancer cells.

I get my next brain and spine scan on Friday 7/22 so fingers crossed things are still stable. I don't think anything is going on but you never know.

Re: My leptomeningeal journey
 

Ann, that's great news. Really pleased for you.

You've been a massive help to us and many others. :)

Can I ask what your normal range for protein is? Would I be right in saying is a lesion/s had be treated by Gamma Knife the protein would still be higher?

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This is great news. I am so pleased for you and your family.

And like freakzilla said: All that research you shared gave me perspective and hope. Thanks.

Re: My leptomeningeal journey
 

You are most welcome.

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Thank you so much, for sharing your story and your accumulation of information! I'm getting a brain mri on Monday and feeling a little anxious about it. Doing my research, I've read all you've posted here (this thread and all the others!). I hope your scan today goes well.